Rossi Daniel, Granström Anna Löf, Pakarinen Mikko, Bjørnland Kristin, de Blaauw Ivo, Ellebæk Mark, Leon Francesco Fascetti, Gloudemans Dirk-Jan, Prato Alessio Pini, Rolle Udo, Schwarzer Nicole, Tabbers Merit, Vilanova Alejandra, Wijnen Rene, Sloots Cornelius E J, Wester Tomas
European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA), Rotterdam, The Netherlands.
Department of Pediatric Surgery, Erasmus University Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands.
Acta Paediatr. 2025 Jun;114(6):1464-1477. doi: 10.1111/apa.17594. Epub 2025 Jan 25.
This study aimed to develop a universally applicable core set of quality indicators for Hirschsprung's disease care through a consensus-driven process, to standardise and improve care quality across Europe.
A modified Delphi method was used to achieve consensus among healthcare professionals (HPs) and patient representatives (PRs) across Europe. Participants completed three rounds of anonymous surveys, rating quality indicators for Hirschsprung's disease care. A systematic literature review informed the initial item list. Results were analysed using predefined criteria, and a final consensus meeting established the core set of indicators.
An international panel of 8 PRs and 96 multidisciplinary health care professionals representing 59 European hospitals completed all questionnaires, eventually including 12 baseline characteristics and 39 indicators. Six of the top 10 indicators were commonly prioritised by both groups. The remaining items were refined through debate and finalised during a consensus meeting.
This study established a core set of 12 baseline characteristics and 14 quality indicators for evaluating Hirschsprung's disease care. These indicators will support benchmarking and continuous quality improvement within the European Paediatric Surgical Audit framework, ultimately enhancing outcomes and care for children with Hirschsprung's disease.
本研究旨在通过共识驱动的过程,制定一套普遍适用的先天性巨结肠病护理质量核心指标,以规范和提高欧洲各地的护理质量。
采用改良德尔菲法,使欧洲各地的医疗保健专业人员(HPs)和患者代表(PRs)达成共识。参与者完成三轮匿名调查,对先天性巨结肠病护理的质量指标进行评分。系统的文献综述为初始项目清单提供了依据。使用预先确定的标准对结果进行分析,并通过最终的共识会议确定核心指标集。
一个由8名患者代表和96名代表59家欧洲医院的多学科医疗保健专业人员组成的国际小组完成了所有问卷,最终包括12项基线特征和39项指标。两组共同将前10项指标中的6项列为优先指标。其余项目通过辩论进行了完善,并在共识会议上最终确定。
本研究建立了一套用于评估先天性巨结肠病护理的12项基线特征和14项质量指标的核心指标集。这些指标将支持欧洲儿科手术审计框架内的基准测试和持续质量改进,最终改善先天性巨结肠病患儿的治疗效果和护理。